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Pulse on the Road: Albany!

When is your open enrollment date?

We had a wonderful visit to Albany, to meet members of the New York Coalition of hemophilia organizations. Bob Graham, person with hemophilia, helped facilitate our invitation and arrival and welcomed us Sunday, March 10. It was a small gathering of families and some clinicians, who eagerly drank in all the insurance information we presented.

Kelly Fitzgerald, associate director of government relations at Patient Services Inc. (PSI) gave everyone a 45-minute update on the Affordable Care Act. Key take-aways include:

• In 2014, everyone must have health insurance
• You may need to select your insurance in a “marketplace”
• You must read your insurance policy annually and carefully!

I then gave a talk called “The Importance of Choosing a Healthcare Plan,” infused with humorous stories of my own son’s struggle with insurance (hint: good idea to have your insurance and medical mail forwarded from mom’s house to your place over a pizza shop!) and stressing that you must pay attention to open enrollment dates. Do you know yours??

Michelle Rice of NHF

Michelle Rice, public policy director of NHF, then gave her acclaimed one hour workshop on the NHF Insurance Toolkit. We passed out workbooks and calculators and I was so impressed by the audience’s dedication! Even the teens were busy crunching numbers to see how “John Doe”‘s medical expenses add up when comparing two plans.

And finally, we had a 30 minute expert panel, so the audience could ask questions of the speakers. I learned a lot. One nurse in the audience offered this excellent piece of advice: when using medical services, instead of asking “Do you accept this insurance?” instead ask, “Are you in network with this insurance plan”? This pointed question could save you so many hassles, time and paperwork!

Teens were even crunching numbers!
Families engaged in NHF’s Insurance Toolkit

Thanks to Bob Graham, the New York Coalition, my team, our guest speakers, and all the families who attended. Deepest gratitude to Baxter Healthcare Corporation for sponsoring Pulse on the Road. For more information about health care reform, visit:

•www.healthcare.gov
•www.patientservicesinc.org
•www.hemophilia.org
•www.hemophiliafed.org

A Father’s Pursuit of Justice

After spending three incredible, wonderful days in Washington DC with our amazing community, it seems the right time to mention this unique book: Vial 023: A Father’s Pursuit
of Justice
by Gary William Cross.

This is a poignant tale of parents who struggle raising a wonderful boy with hemophilia in the 1970s, only to learn later he has contract HIV. When their son eventually dies, the Crosses join forces with other advocates and activists to sue the pharmaceutical companies for negligence, and bring some sort of peace and truce to a fractured and angry community.

There have been many books written about the HIV scandal, most notably Blood by Douglas Starr, and And the Band Played On by Randy Shilts. There have been memoirs of loved ones who have died. But to date no one has told the story of how a select few in the hemophilia community brought down the rigid armor of big pharma, against all odds, while still mourning the loss of their sons, husbands and relatives.

The story is a memorial in many ways to Brad Cross, born on April 30, 1975 in Baton Rouge, Louisiana. Gary, his father, knew that wife Karen and her two sisters were carriers of
hemophilia.

Because of this, the parents suspected, and it was confirmed right away, that Brad had hemophilia. He was not circumcised but his heel prick bled. He was first infused with factor VIII concentrate at the six
months for a bilateral hernia surgery. By age 5, hemophilia seemed under control. The Crosses were excellent parents: Brad received treatment at the hemophilia treatment center at
Tulane University in New Orleans. Both parents worked to ensure two health insurance policies to cover mounting costs. The
family belonged to the Louisiana chapter of the
National Hemophilia Foundation.

When HIV was reported in certain groups of people, and suspected to be in the blood supply in 1985, Brad asked his HTC
hematologist point-blank whether he had AIDS. His physician did not answer, but later
informed Gary that Brad was HIV positive. The HTC had anonymously tested Brad’s
blood, and labeled the vial “Vial 023.” As the disease became full blown, Brad suffered seizures
and a gradual mental deterioration, losing
his speech and his ability to walk.

The narrative of the parents’ love for their son is gripping and evocative. It is a powerful testament to their love for Brad as well as their desire to not have others hurt that the Crosses helped to
initiate in 1991 a class-action lawsuit against four pharmaceutical providers
of the factor concentrate–Alpha, Armour, Baxter, and Bayer–a legal process
that would last 10 years and eventually include 124 families. The Crosses lost almost everything, including hope, but stayed the course, and in the end were victorious.

But not with Brad; he died at home
on April 16, 1993 just days short of his eighteenth birthday. The pharmaceutical
companies offered compensation of $100,000 to each HIV-infected individual with
hemophilia, but some opted for the class-action suit. Gary, a man with high principles, finally received personal apologies from the pharmaceutical CEOs. 

As the mother of a child with hemophilia who has dedicated her life to helping this community, I believe this is a vital story to the hemophilia community’s unique and tragic past, and is a model of advocacy: what one man can do to change the world. Everyone should read it.

As an editor and author I would be remiss if I didn’t, however, point out some problems with the book itself. Expect an amazing story; don’t expect great writing. The text suffers from lack of good editing. There are typos, misspellings of names, and incorrect or incomplete medical and scientific terms. Some of the phrases are quaint and a throw-back to the 1950s. Some will make you cringe as politically or culturally inappropriate. Nothing is documented or footnoted; on page 114 Gary asserts that the four pharmaceuticals never spoke with each other as they were trying to control market share, perhaps not realizing that legally these companies cannot speak with one another due to anti-trust laws.

I recommend trying to overlook these and focus on the story. It is remarkable and Gary Cross is a modern day hero, as are the men and women who fought beside him, many of whom were at Washington Days last week, still fighting the good fight for the future of our children with bleeding disorders.

Gary and his wife, now
retired, continue to serve their community as volunteers and fund-raisers. You can meet them at hemophilia events. Gary serves as chair of the board of Patient Services, Inc. (PSI), which provides insurance premium assistance to families with chronic disorders.

The book is available at Amazon.com. 151 pages, published by Kudu. 2012

The Power of the Common Person: NHF’s Washington Days

Laurie Kelley with Debbi Adamkin,  executive director of Florida chapter

Don’t be nervous!

Ellen Riker told the attentive audience of first-timers at NHF’s Washington
Days on Wednesday, February 27. I was thrilled to be among the first-timers.
And I took a lot of heat for that. For all I have traveled the world, and been
involved with our community for about 24 years, I have never attended
Washington Days! I’m usually in a developing country, as winter provides mild
temperatures overseas. But now, I’m hooked on Washington Days and can guarantee I’ll be back.

Washington Days originally began by HTCs in the 1970s, to
secure more funding. Many of their services were not billable to insurance,
like those for social services and physical therapy. Soon, National Hemophilia
Foundation (NHF) and the HTCs joined forces to help advocate for the HTC
comprehensive care model and in 1975, successfully secured funding. Now, groups of patients and families with hemophilia come from all states to meet with
their representative and senators to speak with one voice about securing funding and preserving care. This year? The largest turnout yet with over 340 people ready to lobby, from nine-year-old Peyton Brush of Texas, who has hemophilia, to, well, people in my age group!

The next speaker, Joanna Gray, told us “You’ll never be
alone when you lobby.” I originally thought we had to meet with our reps solo! But we would go as a regional or state group. “And meeting with the staff is more important than meeting with a senator.” I looked at my agenda and we would have seven meetings in seven hours on Capitol Hill!

The next speaker Wednesday night was Travis Albright, an
articulate young man from Michigan who serves as an aide for representative Gary Peters. He advised, “Lobbying can be intimidating, but you are the most important person there. You have a story to tell. I would prepare facts and figures when I would lobby, but the [hemophilia] camp stories I told made the biggest impression. Every representative in the House represents 600,000 people. You represent your community, which is small. You have awesome power to speak for everyone.”

And Michelle Rice, director of public policy at NHF, stunned
us by saying “We have 220 visits scheduled for tomorrow!”

I have met with Prime Ministers, Health Ministers and even many celebrities. No problem. But I have never once met with my representatives
or senators, and I was feeling nervous! All the speakers put me at ease, and it helped to know I was going with my local group, New England Hemophilia Association (NEHA), an experienced lobby group.
That night we gathered in the Marriott lobby bar to greet old friends, meet new ones, laugh and get ready for the big day.
Laurie Kelley with Jose de la Riva, chair of NHF, father of son with hemophilia

On Thursday the weather was sunny and brisk. You can do a lot of running around on Capitol Hill trying to meet with your representatives. We rehearsed how we would all present our two main concerns: Kevin Sorge, executive director of NEHA, would introduce us and outline why we were here: 1) To maintain the $4.9 million level of funding for HTCs from HRSA, and 2) to request co-sponsorship of H.R. 460, the Patient Access to Treatments Act, and more superficially, to keep hemophilia drugs from becoming tier 4 reimbursable. As tier 4 drugs, the co-pays would be outrageously high, with patients required to pay 25-33% of total costs, truly unaffordable for anyone. This could lead to abandoning prophylaxis and not allowing out children to do sports or travel.

NEHA meeting with Jim Gordon of rep. Stephen Lynch

Then I would give a quick rundown on Hemophilia 101. Showing
my photos of children overseas with swollen joints or head bleeds really drove
home how treacherous hemophilia can be. Then, Greg Price, who has hemophilia, would discuss HTCs, and share his own personal perspective on them. Diane Lima, mother of Jonathan and Andy, would share her experiences with insurance costs and the boys’ quality of life. She created very effective laminated cards on each boy that were teaching tools for the high cost of care. She left behind copies for each representative. Ian Muir, another person with hemophilia, also shared his  personal story. Finally Kim DeAngelis, Ph.D., board member, summarized beautifully the main points and what we needed from the representative. It all went like clockwork!

We had excellent meetings. We noted that some of the representatives’
aides were more observant, some were extremely engaged, some chatted about their
own experiences in healthcare system, but all expressed an interest in supporting
our causes. We can’t say definitely, but I think we scored a couple of co-sponsorships
for H.R. 460! I was deeply impressed by the mostly young aides: how
intelligent, poised and responsive they all were.
Laurie Kelley with NHF CEO Val Bias

It was an intense and long day. Lunch in the Capitol was
hectic, crowded and noisy. Decorated generals huddled in talks next to chatty
tables of young people. Our feet were tired and eyesight blurry by the time we were done. We had a wonderful dinner, more speakers and then back to the bar to
complete evaluations and follow up items. Thank you emails or notes are vital.
I would be sending out copies of my book Raising a Child With Hemophilia to
each person we visited.

I cannot praise NHF enough for their fantastic organization
of this event. It went without a hitch, and everyone worked hard and yet had a
great time. I’m hooked. I’ll be back next year. And I’ll be watching the
political fallout of the budget deficit management much more carefully, now
that I’ve dipped my toe into the political waters of hemophilia reimbursement.
NEHA meetings Joe Kennedy III

To see all the photos, go to http://lakelley.smugmug.com/Events/Washington-Days

Great job NHF!

Chris Bombardier Conquers South America!

Chris Bombardier, a 27 year old with hemophilia B from Denver, Colorado, became the first person with hemophilia to summit Mt. Aconcagua, the highest peak in the Americas. This is his second summit in his bid to be the first person with hemophilia to climb the Seven Summits, the highest peaks on each continent. This is historic!
He climbed to raise awareness of hemophilia globally, and also to raise money for Save One Life, the international sponsorship nonprofit I founded in 2001. Chris also serves on our board of directors. He is an adventurer, outdoorsman, and just one of the nicest people you could ever meet. LA Kelley Communications was proud to support his climb.
He finished off his great adventure with a visit to the Argentina hemophilia society, a group I had met in 2003 when I visited. It is one of the oldest hemophilia organizations in the world.
Here are some of Chris’s postings from his blog, “Adventures of a Hemophiliac.” And look at the photos below to see Chris at the summit holding the photo of Brian, from Zimbabwe, a photo which drew deep responses from our fans on Facebook. We are trying to secure medical aid for Brian.

February 7, 2013
Day 10 of the climb … Today is a carry day for acclimatization for Camp 2 up to 17,800 feet! This trip should take about 6 hours after which the night is spent back down at Camp 1. So far the weather has been outstanding! The climb today was hovering right around the mid-20’s with very little wind and a cloudless sunny day. Couldn’t ask for better weather! After camp tonight, the crew will make the trek up to Camp 2 again and sleep there. It’s predicted to be another perfectly sunny day,
with just a few snowflakes over night.

Rest day and camp one 
32.6380S,69.9771W 

We are reporting in from 5000m at camp one. We tried to send a dispatch yesterday but had some technical issues so sorry about
that. Most of yesterday was spent relaxing, with a little bit of a poker tournament
in the dining tent. 

We had a good climb up to camp one today and we are
lounging in the tents. It is very hot here right now as there is no wind at the
moment. To the east there are some clouds building in the wonderful blue sky.
Our plan is to do a carry to camp two tomorrow. We are excited to be up here
making our way higher into the awesome Andes Range.
Seems like everything is on track and on schedule, so we can expect summit day to be within the expected range of Saturday-Monday, Feb 9-11!

Camp Two 

32.6301S,70.0014W
It has been quite a couple days since our last dispatch. We moved up to camp two yesterday and it was just in time, as the weather closed in and the snow began. The snowfall continued all night for the most part. In fact the weather outlook for the next few days is off and on snow, but if we get a clear windless morning we can push for the top. So tonight we have one more day sleeping at 5500m and tomorrow morning we will climb up to high camp at 6000m and be in position. We will update as soon as we make the next move!

February 8 Summit Push is On! 
   
32.6370S,70.0183W

We are in camp 3, Colera camp at 6000m, yoo-hoo. The plan is to go for the summit in the morning. There is a lot of snow on the route, but we will
team up with several other groups to kick in a route, and hope the weather stays stable long enough for us to sneak up there to the summit before predicted strong winds begin in the upcoming days. Follow tomorrow for the news!!!
Sounds like we may have some news tomorrow about the summit!! Let’s hope the crew gets some good rest tonight, and that the weather cooperates. The forecast estimates a high of 0 degrees at the top, with a wind chill of -24°!! Wind should be around 20 miles per hour with some snow showers.
February 9 Summit!

Chris holds photo of Brian of Zimbabwe at the summit
(From Jessica, Chris’s girlfriend) According to the
schedule, they allowed a few extra days for weather and acclimatization, and
I’m not sure if the first part of the guides’ post meant that they were going
to try to summit again the next day, or if they were going to post more
information the next day. Since they did have some extra days available in
their schedule, they may have stayed at Camp 3 an extra night to allow for a
second attempt at the summit. Either way they should have started their descend
by now, and will camp in Plaza de Mulas base camp the first night (13,780
feet). From the summit at 22,840 feet, that’s a 9,060 foot elevation change in
one day! The route to this camp is well traveled by many and should be an easy
path. After they reach Plaza de
Mulas, they will hike out the Horcones Valley to Pentitentes in a single day. Hopefully
we will know more soon!!

February 11: Quick Summit Update
Extremely sorry for the delay, the rest of the summit update has not happened due to a number of reasons including, missing charge cords, extreme wind, mudslides on the road back to Mendoza, and some other interesting side notes. It was an awesome time up there. We had 9 out of 10 clients and guides summit on a great, only slightly windy day. Chris, David, Benedicte, Gaute, Thomas, Alexander, and Rolf all summited with Ryan and Koky on a cloudless summit. We are very ready for a steak and a beer, so good night from Mendoza!
From Jessica:  Chris called this morning to let everyone know that he is feeling great, albeit exhausted, and had a blast!! He can’t wait to share all
of his stories and pictures with his family and friends who so devotedly followed him on this expedition!

February 12:  Fundación de la Hemofilia de la Argentina
Chris with members of the Fundacion de la Hemofilia
Just visited with the wonderful people at Fundacion
de la Hemofilia de la Argentina! It was a wonderful experience exploring the
treatment center and learning about hemophilia in Argentina! I can’t wait to
get home tomorrow and share all of my stories and pictures!
To contribute, go to www.saveonelife.net

Does [Needle] Size Matter?

Tonight I’m going to blog with a blog; that is, I am scooping someone else’s blog and posting here, in the hopes that you might check out a very cool and educational block that is, moreover, well written! That makes my heart sing as an author and editor.


Ray Perreault is a man with hemophilia who somehow has evaded my mailing list for 23 years. I’m so happy to be in touch with him now. He’s a Florida resident, and is writing a blog primarily for the mature audience. Not as in R-rated, but as in mature in age. It’s great; please read it and recommend it. His blog is called “Hemo: A Blog Of and About Hemophilia. Old and New.”
Here’s his latest posting:
“How small is your infusion needle? 19 gauge, 21, 23, 27? Do you even care? Well, if you are having problems because your older veins are not cooperating like they used to, maybe you should.
“In my history of infusion I have used a 19 gauge, yes I said 19, all the way down to a 23 gauge that comes with most factor these days. I have never questioned the needles I have been given because it didn’t really matter all that much to me…until I got older.”In the beginning I was so happy and excited about getting factor, I would have used a hollowed out rusty nail if I was told that was all that was available. I think I would have done almost anything to get the vital liquid that made my platelets sticky. After living sixteen years without it, you tend to get excited and do what you need to do you know?
“Over the years I went from a small bag hanging from an IV pole with a tube tied to a 19 gauge needle, to a box containing powder and saline with a 23 gauge butterfly. I believe a 23 gauge is the norm, and is what was chosen and placed in my box along with the factor. It has been great and worked for me for many years; some of you may be using this very same butterfly.
“As I got older, and my veins started showing their age, I have had problems with the 23g butterfly. Sometimes I couldn’t access my smaller veins that always worked for me. Many times I had to try a second and sometimes third location before I could infuse. It was obvious to me that I needed a change, so I did some research and spoke to my pharmacy about changing from the 23g supplied in the box with my factor. I ordered a 27 gauge butterfly. This was a little smaller than the 23g, and after trying it I was amazed at the difference it made.
“The smaller needle does require a little more pressure on the syringe and I had to adjust the “feel” I was used to using the old 23g; but I don’t “miss” anymore and the smaller diameter is easier on my veins.
“If you are having problems like I did, and you think a change might help, speak to your doctor, specialty nurse, or pharmacist. They just might guide you toward the butterfly that is right for you.
Read more here: blog.raymondperreault.com
Incredible Book I Just Read
As Nature Made Him by John Colapinto

I first read this story in Rolling Stone Magazine and bought the book as soon as possible. It is extremely well researched and written. The true and shocking story about a twin baby, whose botched circumcision left him with no penis. Under the strong arm tactics of a narcissistic and creepy Johns Hopkins physician, the baby was raised as a girl, while the twin was raised as a boy. Dr. Money saw in the twins the perfect lab experiment to bolster his nurture over nature argument about sexual identification–and make himself famous. Money himself appears to be sexually perverse in the tests he put the twins through, though the hospital always has backed his experiments. The poor parents caved in under his authority. But not “Brenda,” who never once accepted the girl guise. By age 14 Brenda chooses to become David, a man, and actively fights back. You have to admire his incredible willpower under the pressure of the medical profession, humiliating tests and invasive psychological interviews, bullying at school and parents who want him to conform. At the end, you will never want to ignore your gut-instinct when it comes to the medical profession, especially psychology and psychiatry. David knew innately what was best for him and fought the system bravely. Incredible story that will dig deep into your emotions and make an unforgettable impression. Four/five stars.
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